Met with the oncologist today. My PSA was up about 10% into the mid 30s. He told me that means the Lupron is slowly failing, which is good. He wants to keep me on Lupron (and Casodex) until the month to month jumps hit 20% or my PSA exceeds 50.

At that time we’ll add Zytiga to the regimen and drop the casodex. I thought that I’d be done with Lupron, but that’s not the case. I’ll still get Lupron every month.

I’m a little concerned about going off the casodex, since I feel it was a major factor in controlling the depression. He thinks I just got used to the Lupron. At any rate, if the depression returns, I’ll propose we add casodex back to the mix and see what happens.

I also asked about travel next year, specifically in about seven months. He said there shouldn’t be any problems making the trip, good news!

I’ve started to come to terms with my death likely in under two years. The panic attacks are largely gone and the anxiety is much ore manageable. Interestingly enough, the anxiety and panic is almost always the worst right before I go to sleep. I think I just don’t want the day to end and to officially one day closer to death, but who knows.

Met with the oncologist about a week and a half ago to check up on my PSA. As expected, it went up. I am now officially in a category called castration resistant. What this means is I have, on average, less than 2 years to live. There’s nothing quite like knowing this. I felt like I was dead, but yet still alive to cry and grieve. I’m slowly working my way thru this. Staying in the present is the key. Wondering if my next birthday/Xmas will be my last is bad news. It’s hard to stay in the present, but I’m getting better with the help of my wife.

Since Xofigo was FDA approved two years ago, the doctors at Prostate Oncology—Dr. Richard Lam, Dr. Jeffrey Turner and I—have been avid users. So this seems to be a good time to provide an informal update of our experience with Xofigo to the present time.

The clinical trial that led to Xofigo’s approval by the FDA was a prospective, placebo-controlled study demonstrating improved survival in Xofigo-treated men compared to men treated with placebo alone. The trial showed a very low incidence of side effects and good relief for men who were suffering from bone pain.

Xofigo is made out of radium, a radioactive element. After it is injected into the blood stream it concentrates near the cancer and delivers a potent dose of radiation. So after Xofigo is injected into the patient, it travels through the blood stream and concentrates in the irritated areas of the bone and emits radiation where the cancer is most active. Since prostate cancer spreads almost exclusively to bone, an injection of Xofigo ends up targeting most if not all of the cancer. Radiation consists of high energy, subatomic particles that blast cellular DNA. Once the DNA of the cancer cell has been hit, the cell is rendered incapable of reproduction. If you stop cancer reproduction you basically stop the cancer.

To almost everyone, radiation conjures up horrible visions of toxicity. Fortunately, bone marrow toxicity is rare in men because Xofigo emits a different type of radiation, “alpha particles,” rather than the standard “photon type” of external beam radiation. Alpha particles dissipate their energy over a very short distance, only a couple of millimeters. External beam radiation therapy, the type of radiation that has traditionally been relied on to kill cancer cells in the bone, needs to be used very judiciously because the radiation is “beamed” through the body to hit the target in the bone. Typically it causes irreversible damage to the surrounding bone marrow.

Over the last two years at Prostate Oncology, we have treated over 50 patients with Xofigo. The treatment has been very well tolerated. Occasionally, we have seen a few patients with mild diarrhea or nausea that has been easily managed with common medications. Men experiencing pain from cancer usually see either partial improvement or total resolution of their pain after one to three of the monthly treatments.

As reported from the original study that led to FDA approval, even though pain relief occurs and alkaline phosphatase (ALP) levels in the blood decline, PSA may continue to rise. This “disconnect” between PSA and other clinical parameters such as pain and ALP can be disconcerting to doctors and patients alike. The reason that it occurs is unclear. A similar phenomenon has been observed with another FDA-approved cancer therapy called Provenge.

Experts hypothesize that the survival advantage from Xofigo and Provenge is due to a slowing of cancer progression rather than an actual regression of the cancer. This “slowing” is powerful enough to extend patients’ lives but insufficiently powerful to consistently induce a decline in PSA. However, in our practice at Prostate Oncology notable declines in PSA have been observed in a few patients treated with Xofigo. One patient dropped his PSA from 50 down to zero and his PSA still remains at undetectable levels. Another recent patient has dropped his PSA from 150 down to 8.

For the patients on Xofigo who have rising PSA levels, it is logical to consider adding another effective anticancer agent such as Xtandi, Zytiga or Taxotere. It is encouraging to know that several studies now show that Xofigo can be safely combined with these other effective therapies.

Xofigo has been a very welcome addition to our anticancer armamentarium. The standard FDA approved protocol consists of a course of monthly treatments continued for a total of six months. Further trials are in progress to study the potential advantages of continuing Xofigo for longer than six months. Our experience to date suggests that longer therapy would indeed be advantageous in some instances.

Met with my oncologist yesterday. I told him I’d decided the Lupron was failing and that’s why I was freaking out. Strictly speaking I need one more month of an increased PSA for it to officially fail, but I’m convinced that will happen. He mentioned that his next recommended treatment would be Zytiga, which stops all testosterone production, including from the adrenal gland and the cancer itself. I was kind of expecting him to say the Lupron hasn’t officially failed so let’s stay with it. I asked him point blank if he thought the lupron was failing. He dodged the question and said let’s wait two weeks and make a decision then about what to take next, but he penciled in Lupron.

The other thing that came up was my anxiety which is also causing back spasms and insomnia. I met with my GP about a week and a half ago. He said the back spasms are likely the result of anxiety and one of the meds I’m on. I can’t drop that med so we decided to change the times when I take my drugs. That helped for a couple days and then everything was back to where it was.

The oncologist put me on an anti-anxiety pill regimen and we’ll see how that goes.

As far as how I’m doing, the truth is not very well. The anxiety and the back spasms are driving me crazy, mostly the back spams. My back clenches and releases roughly in time with my breathing. It starts about 4-5 in the afternoon and usually lasts until 10-12 in the evening. I’m hoping the new pill will help.

Next meeting is in two weeks with the oncologist to decide what treatment path is next.

Just got back from the oncologist. I got mixed/negative news. My PSA is up slightly from before. If it’s up three times in a row, it’s an indicator that the hormone treatment is failing. When that happens, on average, survival times are less than two years.

In the lead up to this meeting I was a mess. My scanxiety was thru the roof starting back around June 11, when I got the last injection. I had no appetite and lost 5 pounds (not all bad). My energy levels were ridiculously low. The muscles in my back pulsed into and out of spasm. Going to sleep was hard to come by. I made frequent use of xanax and gin and tonics. The oncologist thinks a lot of this is due to the lupron and casodex and how they affect me. I’m off both of them for two weeks starting today and we revisit their use later. I meet with my GP later this week to try to get control of the anxiety and a better handle on what’s causing my lack of energy (he thinks it might be related to my heart attack).

Originally Posted Tuesday, June 9, 2015

Discussing a Painful Subject: Fear of the Process of Dying

BY MARK SCHOLZ, MD

Many men tell me that they fear the process of dying—suffering and experiencing pain—more than they fear death itself. While I am no fan of pain, as a medical oncologist I have been responsible for the treatment of hundreds of patients with terminal cancer. I have learned that with good communication and proper medical management, pain can almost always be effectively controlled.

However, when reviewing the results of a recent patient survey at a meeting sponsored by Bayer Pharmaceuticals with a number of patient advocates, healthcare experts, and other physicians, it became sadly apparent that many patients are not being managed expertly. The survey indicated that many men with advanced cancer are suffering needlessly, mostly due to a lack of good communication with their doctors.

This survey of 410 men with advanced prostate cancer reported that two-thirds of men are trying to handle their pain by ignoring it! One-third of all the men surveyed felt that acknowledging pain made them more fearful, raising anxiety about the possibility that their cancer is progressing. A quarter of the men said, “It was difficult to talk about their pain,” relating that such discussions made them feel weak.

In other words, these men are using a common psychological defense mechanism called “denial.” One thing I have learned from years of experience treating patients is that denial can be a wonderful approach, but only if the situation is totally hopeless. I have observed men who appear to be in denial who are quite happy even when everyone knows that they are dying.

On the other hand, denial is a serious problem if what is being denied, in this case pain, can be fixed or remedied. If men who are in denial fail to discuss pain with their doctors, their access to a solution is blocked.

Using denial can effectively control pain for short periods of time, however, using it on an ongoing basis is psychologically exhausting. Also, while denial might work for the patient, it can’t fool their surrounding loved ones. They see the effects of pain in the patient manifesting as fatigue, depression, inactivity, impatience, insomnia and hopelessness. Ultimately, the caregivers who are not shielded by denial end up suffering even more than the patient.

Cancer patients experience pain from multiple causes, not just their cancer. Invariably, life itself is painful. However, most types of cancer pain can be resolved. The first step is to acknowledge its existence. The second step is to diagnose whether the pain is cancer-related. In the prostate cancer world, cancer-related pain is usually the result of bone metastases. Of course, not all bone pain is from cancer and not all bone metastases cause pain. If a man has pain in one of his bones and a bone scan shows a metastatic lesion in the exact same area as where the pain is occurring, then the probability is high that the pain is cancer-related.

The third step, once it has been confirmed that the pain is cancer-related, is to undertake the appropriate treatment. How to treat cancer-related pain is a topic big enough for another blog all its own. In my next blog I will also elaborate further on the correct medical approach used to distinguish cancer pain from non-cancer pain.

Someone has said, “Not knowing what to do is the worst kind of suffering.” Helping men find a workable solution for pain not only relieves their pain, but it also releases them and their caregivers from the uncertainty and anxiety that comes from not knowing what to do.

I wanted to bring to your attention three valuable resources related to prostate cancer. The first is a set of results from a survey of men with advanced prostate cancer that involved Bayer Healthcare. It highlights the need to improve communication between doctor and patient, as well as, patient and caregivers. It can be found at